Chiari Online Support Group

QUESTIONS/HELP?No impeded CSF flow, surgery criteria, need evidence


#1

Hi,

I was diagnosed with Chiari 1 in December 2018, a 3 - 4mm drop, and have all the symptoms as well as terrible right shoulder, neck and head pain. I’m 27 and have had the symptoms for 6 years. However, the specialist told me that because I DIDNT have impeded CSF flow or crowding, that there was no way that any of my symptoms and pain could be caused by my 3 - 4mm drop or confirmed Chiari Malformation 1 diagnosis. I don’t believe this is possible and just wanted to know if anyone else has had this experience or problem.

I am also looking for any proof from medical or scientific journals or doctors (anything written from an official authentic source) ,that says you don’t need to have impeded CSF flow or crowding to have the symptoms of Chiari 1 if diagnosed.

Lastly has anyone had surgery who has a drop of 3mm, 4mm or 5mm ? As a doctor told me the surgery criteria is 6mm and or has anyone helped you in any other way?

Thanks for reading,

Paz


#2

Hi, Paz. My herniation was minimal, and often wasn’t even measured when getting MRIs. However, my symptoms worsened through the years, with a diagnosis about 14 years prior to my eventual surgery. They never saw impeded flow on the MRIs. I had horrendous pain in the right shoulder, head, and neck that worsened to the point of being debilitating in the year prior to surgery. I started to randomly fall, and that’s when we decided to do the surgery. My surgeon noted that I had no pulsation of the dura, and a complete blockage. It was all much tighter and worse than it looked on the MRI. My advice is to find a surgeon who is a Chiari expert. I was lucky to work with Dr. Eric Trumble, who is a true expert in the field. Different surgeons have vastly different approaches, and finding someone that takes your symptoms seriously is key.
For pain relief in the interim, I highly recommend myofascial release if you can find a good practitioner and afford the treatments. It’s the only thing that really helped me prior to my surgery with the terrible shoulder pain. In fact, a year and half post surgery (which was a huge success), I still get myofascial release at least once per month and more when I get sore. Good luck!


#3

Hi thanks for the reply,
can I ask how it went from having no impeded flow seen, to a complete blockage? And if it was a long time inbetween the two, how long was it. Also what does ‘no pulsation of the dura’ mean, haven’t heard that term yet, does that just mean the block was really bad. And finally did the doctor have an explanation of why it was much worse and tighter in reality than the scans actually showed?
Thanks for any information you can give, I’m on a mission! :blush: